ASD EU and EU AIMS research projects: results and future impact

Dr Manuel PosadaDr Manuel Posada is Director of the Institute of Rare Diseases Research (IIER), Instituto de Salud Carlos III, and leader of several rare diseases activities in Spain and autism. He is also the Director of both the National Biobank on Rare Diseases (ISCIII) and the National Rare Diseases Registry. He is also an independent expert of the Commission Expert Group of Rare Diseases (CEGRD), European Commission and also of the Advisory Board of the European Commission Platform Rare Diseases Registration. He is a member of the expert panel of ASD at the European level. In 2000, he created the Group of Experts Autism Spectrum Disorders in Spain (GETEA). Currently, he is leading the Autism Spectrum Disorders in the European Union – ASDEU project and co-leading some Spanish projects in ASD as well as some other autism European projects in the 2000s years.

Professor Diana SchendelDiana Schendel is Professor of psychiatric epidemiology at the National Centre for Register-based Research and the Department of Public Health, Aarhus University and senior researcher in autism epidemiology in the Lundbeck Foundation Initiative for Integrative Psychiatric Research (iPSYCH; http://ipsych.au.dk/) in Denmark. She received her PhD in biological anthropology at the Pennsylvania State University and joined the Developmental Disabilities Branch at the Centers for Disease Control and Prevention (CDC) in the US in 1993. Her CDC work included scientific leadership for the largest, multi-site autism epidemiologic study in the USA, called the Study to Explore Early Development (SEED), and establishing the International Collaboration for Autism Registry Epidemiology (iCARE), the first multinational research consortium in autism epidemiology. Diana has focused for many years on disentangling autism trends and investigating risks for autism, including family history and pregnancy factors. She is now committed to understanding both the causes and consequences of autism, especially in adults. She is particularly interested in autistic adult issues in services and care, from transition during late adolescence through adult life.

Professor Tony CharmanTony holds the Chair in Clinical Child Psychology at the Institute of Psychiatry, Psychology & Neuroscience, King’s College London. His main research interest is the investigation of social cognitive development in children with autism and the clinical application of this work via screening, diagnostic, epidemiological, intervention, and ’at risk’ studies. He is a Chartered Clinical Psychologist and works in a specialist service for children with autism and complex neurodevelopmental conditions at the South London and Maudsley NHS Foundation Trust. He has published more than 250 peer-reviewed papers and over 30 book chapters. He has served on a number of expert panels for the Medical Research Council and NICE in the UK, NIH in the USA and the WHO.

Aurélie BarangerAurélie Baranger has been the Director of Autism-Europe (AE) since 2007. Her mission includes the overall coordination of the network of member associations, and the management of AE advocacy and policy work, liaising with EU decision-makers and other key stakeholders. She has worked on a wide-range of European projects and policy issues to promote a right-based and evidence-based approach to autism. Aurélie has conducted several European-wide surveys and co-authored European reports on good practices in the field of autism. She has also contributed to the organisation of Autism-Europe International congresses.

Aurélie has a Master in History and International Relations (University of Nantes), and a Master in European Public Management (Institut Supérieur du Management Public et Politique, Paris). Her previous experiences include working for the European Disability Forum on a capacity building project with disabled people’s umbrella organisations of the Western Balkans, and a project on mainstreaming disability policies in local public policies at the local and regional level. Prior to that, she also worked for DG Enterprise, European Commission and for the European Community of Consumer Co-operatives.

Zsuzsanna SzilvásyIn 1993, Zsuzsanna graduated as an architect from the Budapest University of Technology and Economics. She has two children; Márton was born in 1993 and Mihály in 1997.

Zsuzsanna's professional life in the field of autism started after receiving the diagnosis for her second child. First, she started studying at the University of Birmingham and working as a volunteer for the Hungarian Autistic Society (www.aosz.hu). At the national organisation, she was responsible for the international connections, and thanks to these experiences and the knowledge, she worked on launching family and school groups in Hungary, and later she was elected as the President of the Hungarian Autistic Society. During this time, the Society has conducted the one and only Countrywide Autistic Research, and based on international examples it started different educational, communicational and advocacy programs.

Zsuszanna has also coordinated several international projects in Hungary, one of the most recognised one was the 10th Autism-Europe International Congress (http://www.autismcongress2013.eu).

Thanks to her broad experience and knowledge in the field of autism, she has been invited to speak about the rights and goals of people with autism at national and international conferences, at the Geneva headquarter of WHO, and at the United Nations in New York.

Abstract

This session will look at the ASD EU and EU AIMS research projects, discussing the results of each project and their impact on future EU policy. More information about each of the projects is below: Autism Spectrum... [ view full abstract ]

This session will look at the ASD EU and EU AIMS research projects, discussing the results of each project and their impact on future EU policy. More information about each of the projects is below:

Autism Spectrum Disorders in the European Union (ASDEU)

Autism Spectrum Disorders in Europe is a new, trans-European programme involving university, charities and expert institutions to increase understanding of autism. Understanding about autism will get a boost as universities, charities and expert institutions from 14 European countries come together in a major new programme. Autism Spectrum Disorders in Europe (ASDEU) has been funded by the European Commission to research autism diagnosis, prevalence and interventions and to improve care and support for people with autism.

Autism Spectrum Disorders in Europe (ASDEU) is a three-year programme run by a consortium of 20 groups from 14 countries. ASDEU has received 2.1 million euros from the Directorate-General of Health and Consumers of the European Commission (DG-SANCO) to increase understanding of and improve responses to autism. It will: study the prevalence of autism in 12 countries in the European Union; analyse the economic and social costs of autism; review existing arrangements and develop proposals for early detection programmes; train professionals; validate biomarkers for the disorder; and improve understanding of diagnosis, comorbidity, and effective care and support for adults and senior citizens with autism.

In the field of public health, ASDEU will also collaborate with European Autism Interventions – A Multicentre Study for Developing New Medications (EU-AIMS) http://www.eu-aims.eu to improve quality of life and prognosis for people with autism.

European Autism Interventions - A Multicentre Study for Developing New Medications (EU-AIMS)

EU-AIMS is the largest single grant for autism in the world, and the largest for the study of any mental health disorder in Europe. EU-AIMS involves a novel collaboration between organisations representing affected individuals and their families (Autism Speaks, Autism Europe), academia and industry who for the first time in the world have come together to develop the infrastructure underpinning new treatments for autism. The Innovative Medicines Initiative (IMI), a large-scale public-private partnership between the European Union and the pharmaceutical industry association EFPIA, funds the project. Over-arching goals include: (1) the development and validation of translational approaches for the advancement of novel therapies to treat ASD; (2) setting new standards in research and clinical development to aid the drug discovery process; and (3) identification and development of expert clinical sites across Europe to run clinical studies and trials. The work programme ranges from basic laboratory science to clinical studies with large cohorts of patients, unprecedented in scope and ambition. We will couple this integrated research effort with the development of new training opportunities and the implementation of new analytical approaches. We expect that these integrated approaches will provide valuable first steps towards stratified medicines approaches, where different (medical and non-medical) treatments are tailored to a person’s needs and biological profile. We will discuss the implications and impact of this approach on policy and practice over the next decade.